Background: The objective of this study was to develop a Paediatric Oncology Trigger Tool aimed at facilitating the detection of adverse events and no-harm incidents in the patient process from specialised hospital care to home healthcare in paediatric oncology. The development of the trigger tool addresses the need for enhanced safety knowledge in paediatric oncology, particularly as the field has increasingly transitioned from inpatient admissions to day care and home healthcare settings. Existing trigger tools do not fully meet the specific requirements of paediatric oncology, where care is collaboratively provided by patients, parents and healthcare professionals.

Materials and methods: The study employed a multi-step process, including a literature search, a three-phase modified Delphi process, and the practical application of the trigger tool. All six Swedish paediatric oncology centres were represented in the Delphi process. Medical records were reviewed as part of the national multicentre study Patient Safety in Paediatric Oncology, which included participation from four out of six paediatric oncology centres, covering 64% of the population in Sweden. Data were collected from stakeholders representing the patient process from specialised hospital care to home healthcare in paediatric oncology, as well as from reviewers of medical records, and representatives with patient safety and trigger tool methodology expertise. Data were gathered through virtual meetings and web-based surveys, where the triggers were discussed and rated in terms of clinical relevance, comprehensibility and usefulness. Ratings were made using a four-point Likert scale. A dichotomisation process was used to assess consensus, defined as the proportion of respondents giving the same dichotomised rating.

Result: The key outcome was the development of a Paediatric Oncology Trigger Tool. The final tool consisted of 22 triggers with definitions and decision support information, designed to enhance understanding of patient safety in paediatric oncology.

Conclusions: The application of a multi-step development process resulted in a final context-specific trigger tool, the Paediatric Oncology Trigger Tool, addressing unique patient safety needs. The tool can be used in local safety initiatives aiming to improve safety for children with cancer. Additionally, this paper provides a transparent description of a systematic development process.

BACKGROUND: In pediatric oncology, randomized clinical trials are an integral part of standard treatment. Because enrollment typically must occur before therapy begins, families receive trial information shortly after diagnosis and must provide consent within a brief time frame. The informed consent process therefore often takes place while parents are experiencing emotional stress, have limited medical knowledge, and have little opportunity to reflect on or discuss the available treatment options, as stipulated by good clinical practice.

OBJECTIVE: To gain insight into parents' experiences of the informed consent process and their motivations for participating in a randomized clinical trial.

METHODS: A Nordic survey using a study-specific questionnaire was conducted. Parents of children enrolled in the NOPHO-DBH AML 2012 and B-NHL 2013 protocols responded. A multimethod approach was applied. Quantitative data were analyzed using descriptive statistics and factor analysis, while qualitative data were analyzed thematically.

RESULTS: In total, parents of 72 children (60 single mothers, 32 single fathers, and 8 couples) participated, yielding 100 complete questionnaires. The two protocol groups were similar in sample size, with 49 participants from AML 2012 and 51 from B NHL 2013. Factor analysis identified three factors and one single-item indicator. No statistically significant differences were found between the protocols for any of the variables examined: Influence of information provided (Factor 1; p = .570), Emotional influences (Factor 2; p = .308), Influence on decision-making (Factor 3; p = .017), and Perceived impact on care in the event of non-participation (Indicator; p = .174). The qualitative results illuminate the parents' motivation for enrollment which comprise three themes: Opportunities and risks associated with new treatment, Contributing to research and helping others, Information and strain in the situation.

CONCLUSION: This study contributes to a broader understanding of parents' experiences of the informed consent process within the context of standard treatment practice in pediatric oncology. Despite making decisions under considerable emotional pressure, most parents reported satisfaction with the information provided and did not express regret regarding their enrollment decision. The findings underscore the importance of communication practices that support parents' comprehension and decision-making during the consent process.

BACKGROUND: The first year of a child's life is essential for promoting a healthy life, and the transition to becoming a parent can be a challenge; parents need to develop confidence in their own capacity to care for their child. The national Child Health Services programme in Sweden offers parental support, both on a universal level and in accordance with the individual family's needs. This study explores parents' experiences of an extended home-visit programme offered through a Family Centre to all first-time parents in a municipality.

METHODS: This case study is based on a qualitative reflexive thematic approach, using interviews with first-time parents. Fourteen mothers and five fathers who had taken part in the extended home-visit programme were interviewed by telephone between February 2023 and April 2024.

RESULTS: The analysis resulted in one overarching theme, Universal home-visits create preconditions for tailored parental support, and four subthemes: Relations and continuity are essential; Different professional competencies complement each other and reinforce support; Home environments increase the feeling of security; and The universal approach facilitates acceptance. The parents had mainly positive experiences and thought that extended home-visits could benefit all first-time parents, not only those in socioeconomically vulnerable areas.

CONCLUSIONS: This study shows that universal extended home-visits create preconditions for more family-tailored support and strengthen first-time parents in developing their parenthood, which in turn increases the possibilities for optimal growth and development of the child.

BACKGROUND: Coproduction is an inclusive approach for improving health and social care services, and coproduction research mostly focuses on participating stakeholders who are not researchers. Programme theories are important for designing, evaluating and disseminating change initiatives; however, few empirical studies on quality improvement initiatives or coproduction projects include explicit programme theories. This study addresses these knowledge gaps by describing new researchers' initial implicit programme theories of coproduction from three different system perspectives.

METHODS: This is a cross-sectional interview substudy that includes 12 respondents. The respondents are new researchers (doctoral students) in Samskapa, an international research programme. The respondents conduct their studies in their own national contexts: Western Europe and North America. The interviews focus on their thoughts and experiences of coproduction, and the data are analysed using directed content analysis based on central concepts of programme theory. Coded statements are additionally coded for the system perspective they refer to. To describe programme theories of coproduction from micro-, meso- and macrosystem perspectives, a latent interpretation of the data is carried out. The consolidated criteria for reporting qualitative research (COREQ) checklist for qualitative studies was used to assure quality standards.

RESULTS: A generic programme theory of coproduction is suggested: If microsystem actors collaborate, facilitated by mesosystem mediators and supported by macrosystem managements' feedback and engagement, then coproduction will occur and health and welfare systems will improve.

CONCLUSIONS: Coproduction projects are complex interventions that exhibit equifinality - a principle from open systems theory which posits that similar outcomes can be achieved through multiple, distinct pathways. Programme theories of coproduction from several system perspectives can be merged into a generic programme theory, which in turn can capture the interventions' complexity.

BACKGROUND: Trigger tools are widely used for detecting adverse events. Within the multicentre study Patient Safety in Paediatric Oncology, a trigger tool was created to address the unique needs of paediatric oncology. Although trigger tools are highly valued for detecting adverse events, concerns about their usability and reliability persist. Understanding the perspectives of medical record reviewers using these tools may provide valuable insights for improving their usability and reliability. This study aimed to explore the experiences of medical record reviewers involved in the development and use of a Paediatric Oncology Trigger Tool.

METHODS: A descriptive qualitative case study was conducted to investigate the experiences of medical record reviewers participating in the development and use of the Paediatric Oncology Trigger Tool. Data were collected through a semi-structured focus group interview conducted via Zoom, involving six reviewers with varying levels of experience in paediatric oncology and trigger tool methodology. The interview was audio-recorded and transcribed verbatim. The written text was analysed in its entirety using reflexive thematic analysis.

RESULTS: The analysis revealed an overarching theme of knowledge building with three themes: competencies, resources and usefulness. The findings highlight the importance of collaborative learning, expert support and adequate resources, while also noting challenges such as time consumption and the emotional impact of reviewing medical records of critically ill children.

CONCLUSIONS: This study offers a comprehensive examination and clarity regarding the development and use of a patient safety instrument, a process marked by both challenges and facilitators from the perspective of medical record reviewers. The study underscores the need for resources, training and support during the review process to ensure the reliability and usefulness of the trigger tool.

Introduction: Previous studies have identified differences in healthcare contacts, needs, and cost of care among persons living with multiple sclerosis (MS). The need for a deeper understanding of factors influencing healthcare contacts has been highlighted. The aim of this study was to explore different levels of healthcare contact frequency among persons living with MS.

Method: Both quantitative and qualitative data were collected, analyzed, and integrated in a parallel mixed-methods approach with data integration through joint display. Data were retrieved from the hospital administrative system, the Swedish national MS registry, and a previously conducted interview study. The population was divided into four segments based on healthcare contact frequency, ranging from Segment 1, with the fewest visits, to Segment 4, representing those with the most frequent contacts. Analyses were conducted using descriptive statistics, statistical tests on differences between segments, multinomial logistic regression, deductive content analysis, and integration.

Results: The mean and median distribution of individual study variables increased or decreased (depending on scale direction) between segments for most variables toward more symptoms, reduced function, and declining experiences of health from the lowest to the highest contact frequency. The probability of belonging to a certain segment was influenced by the explanatory variables age, gender, overall health, and expanded disability status with the different variables playing different roles for each segment. Qualitative findings also suggested increased physical limitations with increased level of healthcare contacts. This was not necessarily due to MS and influence of comorbidities was sometimes expressed. Both requests of less and more healthcare contacts existed and content of healthcare contacts could have more personalized design overall, health care was perceived positively across all segments. Data integration with merged interpretation included eight themes, characteristics of the population, neurological assessment and gait function, symptoms and consequences, fatigue and cognition, perspectives on health, examinations, interactions with health care, and disease duration and future. The merged interpretation confirmed patterns of symptoms, reduced function, and declining experiences of health from the lowest to the highest contact frequency and expanded on individual variation within segments and influenced by comorbidities. Discord in data regarded relations with others, aspects of medication, and knowledge building and type of MS.

Conclusion: The findings on distribution of variables and experiences across segments, were increase in symptoms, loss of function, and deterioration of health experience correlating with increased levels of contact frequency from Segments 1 to 4. The explanatory variables found were age, gender, overall health, and expanded disability. The merged interpretation, expand on individual differences on how symptoms were experienced and influenced by comorbidities. Discord found, regarding for example personal context and aspects of self-care where areas that may be overlooked in healthcare contacts. The explanatory variables identified in this study are suggested to be further explored together with the knowledge of persons living with MS and professionals.

INTRODUCTION: Trauma causes nearly six million deaths annually and is the leading cause of death in the working-age population. Systematic, multidisciplinary, team-based initial care is vital. Trauma nursing addresses complex physical and psychological needs, enhancing patient outcomes and preventing complications. However, acute care settings have challenges, such as heavy workloads and high patient-to-nurse ratios.

AIM: This study aimed to explore nursing staff́s perceptions of reasons for missed nursing care for patients with traumatic injuries.

METHODS: Four semi-structured group interviews were conducted with 22 registered and assistant nurses caring for trauma patients in a level one trauma center. The data were analyzed using thematic analysis and an inductive approach.

RESULTS: The main findings revealed that complex organizational challenges hinder consistent nursing care. Factors such as patient characteristics and team composition necessitate prioritizing medical interventions over nursing care, leading to feelings of inadequacy among nurses when they are unable to provide timely care.

CONCLUSION: Our findings indicate that essential nursing care is frequently overlooked in the trauma ward, often taking a backseat to medical interventions. This trend arises from the intricate dynamics of patient characteristics, team composition, and the organizational environment.

Background: Involving patients in care and ensuring structured continuous follow-up can be challenging. Using Patient-Reported Outcomes during routine encounters can enable patients and healthcare professionals to collaboratively focus on the patients needs and adjust treatments over time. Previous research highlights the benefits of continuous feedback and solution-focused methods in psychiatric care. DIALOG + is a digitally supported conversational intervention designed to enhance the therapeutic effectiveness through self-reported outcomes and a solution-focused approach. This study explores patients' experiences of using DIALOG + in Swedish psychosis care, focusing on its integration of continuous feedback and a solution-focused approach to support active patient participation in planning and evaluation of care.

Methods: A qualitative exploratory study using Reflexive Thematic Analysis was conducted. Individual semi-structured interviews were carried out with ten patients who had used DIALOG + three or more times.

Results: The analysis identified two themes: “The supportive features of DIALOG +” and “DIALOG + provides a constructive structure”. These themes included six sub-categories: “Expanded the understanding of my health,”; “Moving toward improvement,”; “Provided memory support,”; “Empowering participation,”; “Distinguishing DIALOG + as a constructive complement,” and “Experiences of the digital interface.”

Conclusion: This study suggests that DIALOG + may enhance care for patients with psychotic disorders by:

1. Expanding the understanding of the patient's health by enabling a more comprehensive and nuanced picture of the patient's situation.
2. Promoting improvement by focusing on solution-oriented discussions and concrete actions.
3. Providing valuable memory support for patients, which facilitates follow-up and continuity of care.
4. Strengthening patient involvement in their own care.
5. Offering a digital interface that facilitates structured communication between patient and healthcare provider.

This intervention has the potential to enhance patient participation and foster co-production, aligning with national healthcare priorities.

BACKGROUND: All children should have the possibility to be healthy during childhood, according to the Convention on the Rights of the Child. In Sweden, the Child Health Services (CHS) support all parents and children from birth until the age of six to promote children's health and development. Some Swedish regions have introduced an extended home-visit programme, with CHS nurses and social workers visiting first-time parents together to provide parental support in collaboration. The programme aims to expand the task of promoting the child's health and increase the possibilities of discovering risk factors in families earlier. The aim of the present study is to describe the professionals' experiences of collaboration when introducing the extended home-visit programme to a broader population within the frame of a family centre.

METHODS: The study used a reflexive thematic qualitative approach with focus group interviews. All staff at the family centre were invited to participate: CHS nurses, social workers, and managers who worked with the extended home-visit programme. Data were collected through focus group interviews with each profession separately and analysed through reflexive thematic analysis.

RESULTS: One overarching theme emerged: A key to facilitating early support. Three connected themes - Ease for everyone on the family's terms, From working alone to becoming a team, and A matter of supporting structures - illuminated the participants' experiences. Their driving force was early detection of risk factors or needs in the family, to be able to provide support. The collaboration was enhanced by the different professional competencies complementing each other. That all were located at the family centre together was also important to facilitate collaboration.

CONCLUSIONS: The extended home-visits were appreciated and experienced as useful by all participants. That a family centre organization already existed was one of the facilitators, functioning as a meeting point to expand the collaboration. The managers' support was essential, and it was experienced as positive that the organization invested resources to allow employees to participate in the development of the extended home-visit programmes. This way of working has the potential to add value for the children and families, and the CHS would benefit from using the extended home-visit programme further.

Aim: To study Swedish pediatric oncologists’ practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials.

Methods: A nationwide study was conducted using a mixed-method approach. Structured interviews based on a study-specific questionnaire and participants’ personal reflections were utilized. Survey responses were analyzed using descriptive statistics, while participants’ comments were analyzed using thematic analysis. All interviews were recorded and transcribed verbatim.

Results: In total, 29 physicians with 4 to 32 years of experience in pediatric oncology participated, with 19 (66%) having > 10 years of experience. Three themes appeared: 1) Optimization-based approach focused on finding the most suitable treatment and care for every child with a refractory/relapsed cancer eligible for an early-phase clinical trial; 2) Team-based approach aimed at establishing local and national consensus in decision-making for treatment options, including early-phase clinical trials and palliative care; 3) Family-based approach in which the physicians provided families with actionable information, listened to their desires, and endeavored to maintain hope in challenging circumstances. Several participants (40% with ≤ 10 years of experience and 58% with > 10 years of experience) viewed the early-phase clinical trial as a potential “chance of cure”. A majority (80%) of physicians with ≤ 10 years of experience, reported that they often or always felt personally and emotionally affected by communication regarding early-phase clinical trials. Delivering difficult news in cases of uncertain prognosis was identified as the major challenge. None of the study participants felt adequately prepared in terms of sufficient knowledge and experience regarding early-phase clinical trials. The physicians expressed a need for guidance and training in communication to address these challenges.

Conclusions: Working with early-phase clinical trials highlight a field where physicians cannot solely rely on their expertise or past experiences, and where they are likely to be deeply emotionally involved. Physicians who care for children eligible for such studies require targeted educational initiatives and supervision.